“One feels anger to know there is no one to help us!”. Perceptions of mothers of children with Zika virus-associated microcephaly in Caribbean Colombia: A qualitative study

Background The epidemic of Zika virus (ZIKV) was associated with a sudden and unprecedented increase in infants born with microcephaly. Colombia was the second most affected country by the epidemic in the Americas. Primary caregivers of children with ZIKV-associated microcephaly, their mothers mainly, were at higher risk of suffering anxiety and depression. Often, these women were stigmatized and abandoned by their partners, relatives, and communities. Methodology/Principal findings This study aimed to understand the perceptions about ZIKV infection among mothers of children born with microcephaly during the ZIKV epidemic in Caribbean Colombia, and the barriers and facilitators affecting child health follow-up. An exploratory qualitative study, based on Phenomenology and Grounded Theory, was conducted in Caribbean Colombia. Data were collected through In-Depth Interviews (IDI) from women who delivered a baby with microcephaly during the ZIKV epidemic at Clínica Salud Social, Sincelejo, Sucre District (N = 11). The themes that emerged during the interviews included experiences from their lives before pregnancy; knowledge about ZIKV; experiences and perceptions when diagnosed; considering a possible termination of pregnancy, and children’s clinical follow-up. In some cases, women reported having been told they were having a baby with microcephaly but decided not to terminate the pregnancy; while in other cases, women found out about their newborn’s microcephaly condition only at birth. The main barriers encountered by participants during children’s follow-up included the lack of psychosocial and economic support, the stigmatization and abandonment by some partners and relatives, and the frustration of seeing the impaired development of their children. Conclusions This study contributed to identifying the social, medical, psychological, and economic needs of families with children affected by the ZIKV epidemic. Commitment and action by local and national governments, and international bodies, is required to ensure sustained and quality health services by affected children and their families.


Abstract:
Background The epidemic of Zika virus (ZIKV) in the Americas was associated with a sudden and unprecedented increase in infants born with microcephaly. Colombia was the second most affected country by the epidemic in the region. Primary caregivers of children with ZIKV-associated microcephaly, their mothers mainly, were at higher risk to suffer from anxiety and depression . Often, these women were stigmatized and abandoned by their partners, relatives and communities. Methodology/Principal findings This study aimed to understand the perceptions about ZIKV infection among mothers of children born with microcephaly during the ZIKV epidemic in the Caribbean Colombia, and the barriers and facilitators affecting child health follow up. An exploratory qualitative study, based on Phenomenology and Grounded Theory, was conducted in the Caribbean Colombia. Data were collected through In-Depth Interviews (IDI) from women who delivered a baby with microcephaly during the ZIKV epidemic at Clínica Salud Social, Sincelejo, Sucre District. Themes that emerged during the interviews included experiences from their lives before pregnancy; knowledge about ZIKV; experiences and perceptions when diagnosed; considering a possible termination of pregnancy, and children's clinical follow up. In some cases, women reported having been told they were having a baby with microcephaly, but decided not to terminate the pregnancy; while in other cases, women found out about their newborn's microcephaly condition only at birth. The main barriers encountered by participants during children follow up included the lack of psychosocial and economic support, the stigmatization and abandonment by some partners and relatives, and the frustration of seeing the impaired development of their children.

Conclusions
This study contributed to identifying social, medical, psychological and economic gaps of families with children heavily affected by the ZIKV epidemics. Addressing these gaps is essential to ensure access to quality health care by affected children and their families. and will appear in the published article if the submission is accepted. Please make sure it is accurate.
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Participants' profiles 190 A total of eleven women whose children were born with microcephaly born during the first semester 191 of 2016 were enrolled in the study. Average age of participants was of 26 years. All female caregivers 192 were the biological mothers of the microcephalic children, except for one who was the grandmother 193 of the child whose biological parents refused to take care of the baby. Table 1  All US exams were normal. Only concern clinicians had was that the baby had intrauterine growth restriction.

332
Most women, while talking about the difficulties faced raising a child with special needs, also 333 mentioned how "lovely and happy" they and their children are; and that their existence is their main 334 motor in life. But also, a participant declared that they "were not ready" for assuming the challenges 335 of caregiving a child with so many special needs. Some direct and indirect effects of caregiving a 336 child with microcephaly in an endemic area for ZIKV, and a resource-constraint setting are detailed 337 in Table 2. 338

Religiosity
 Stronger religious beliefs  Religion/spirituality was a coping mechanism for families to try to explain to themselves why they delivered a child with microcephaly  Religion/spirituality was mentioned as an explanation to refuse a termination of pregnancy as it was believed to be "God's will"  Religion/spirituality provided them strength to continue with their lives and take care of the baby  Religion/spirituality makes them believe their children will improve (i.e. walk or talk) "Sometimes they say to you 'No, no, the girl is not going to walk'. The healthcare professional says one thing and God says another one [because this child can walk]" (María, 32 years old) "For a reason God wanted to send him to us" (Nadia, 21 years old) "God took the decision that she had to live" (Judith, 29 years old)

Group of mothers with children with microcephaly
 They meet with their children and see their progresses  They talk and give advices to each other  They practice sport together "Just by social media one talk to another, about the child that has something or another thing… but with time everything gets monotony, because they are all the same way, and so, the moment arrives that we don't talk about the babies, we don't know what to say [...]

Socioeconomic context Economic
Already poor families have decreased their incomes by several reasons:  Not able to study or work outside the home and need to take special attention to the baby 24h a day. One interviewee sells refreshments and sweets at home, as that is the only thing she could do while staying home taking care of the child.  Children need to attend several different medical specialists' different days and on different locations: paediatrics, infectiology, physiatry, among others  Children need to attend neurodevelopmental therapies every day or at least twice a week  Hard decisions are taken by some families: 'to eat' one day or 'to go attend therapy'  Some relatives refused to take care of the microcephalic child.
One interviewee declared that her daughter and her son-in-law left their child with her (biological grandmother) and did not provide economic support either. "In therapy, they only give me 5000 pesos [to attend the visit]" [5000 Colombian pesos corresponds to 1.4 USD]" (Nadia, 21 years old) "[The health centre] does not support us. They only support the children that need to come from outside the city" (Carla, undefined age)

Psychosocial
 Some woman received counselling, they talk to psychosocial workers while the children are in therapy  Others, complain about the lack of psychosocial support available for these families  Mental health of the mothers and other family members worsened during these years "During children's therapies there are psychologists that take some time for us also. They help us talking to express how we feel, we get relieved" (Georgina, 43 years old) "One feels alone, sincerely, from the government, from society, and from a lot of people that surround us, sometimes even from family members" (Adelaida, 27 years old) ; and, that they require specific drugs, 345 vaccines, and therapies, to calm them, and eventually stand up and/or walk. Women explained that 346 they need to attend daily or weekly therapies in specific clinics, and try to do daily therapies at home.

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While the majority of women complained that those weekly visits are far from the ideal treatment 348 their children needed, they also expressed the barriers they had to overcome to take them to the clinic.

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One woman explained that microcephalic children' neurodevelopment highly depends on mothers' 350 support, by all means (economic, educational, familiar…). To note, this family lives in the most socio-351 economically advanced household compared to the rest of the group; and they are aware that her child 352 is the one who has developed the most (she can walk, attends school, and says a few words), quote 353 here: "Children's improvement from all this process of therapy highly depends on mothers' support. Additionally, one woman explained the great responsibility that is having to raise a baby with so 358 many several anomalies, in a moment when still there are no specific treatments for children exposed 359 to ZIKV while in the uterus, and their development is uncertain: "We do not have the knowledge to 360 carry out this huge responsibility, that sometimes, we don't know how to handle it" (Adelaida, 27 361 years old).

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The main barriers and facilitators detected affecting children follow up are described in Table 3.   363   364  Table 3. Main barriers and facilitators affecting adherence to medical follow up of microcephalic 365 children 366

Categories Barriers Facilitators
Personal motivation  Not seeing that specialized care received is significantly improving children' neurodevelopment or abilities.
 Realising that the baby' neurodevelopment has improved with specialized care received Social  Absence of partner/relatives' support.  Difficulties in finding somebody to look for these babies, if mothers need to be outside from home, as they need specialized care.
 Relatives and neighbours sometimes care for children from other families.  Close family/neighbours' relationships facilitate caregiving.

Logistical
 Some visits are very far away from their houses (even in different Districts): they lack private transportation, money to pay for public transport, or the baby is too heavy (3 years old) to be carried by their mothers' long kilometres.  Most women lift their children for hours to get to the clinic.  Weather conditions difficult attendance to therapies, especially in the rainy season.
 Referral to the nearest healthcare facility to increase attendance.  Some women have been derived to centres close to their homes. In other cases, there are free buses from the clinic that pick up every mum and baby early morning to get to the therapies.

Economic
 Costs associated with specialized drugs and vaccines children need  Costs associated with weekly travel to therapies and monthly/yearly hospital-based exams (food for themselves and their accompaniment, loss of working hours/home chores/schooling for the mothers and their accompaniment…)  Costs associated with impossibility to work outside the home with a dependent child  Lack of a baby trolley to facilitate transportation of the child  Funds given for travel costs once they are in the clinic, they are more prone to attend those visits.  Monetary compensation to buy essential needs such as diapers, but those require legal demands and a lot of bureaucracy

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The main limitations of the study are that the sample size may not be big, although it does not 516 represent a concern because of the richness of the information obtained.